Friday, August 27, 2010

Vacations are terrible for us. The vacation part is fabulous but the highs that seem to result are torture. You see there is the limited activity while you are driving, flying, boating or visiting. There is also all of those strange carbs. You tend to eat out more and eat new foods at friends and family dinners. On occasion we get the carbs right but more often we seem to miss testing, bolusing or getting the cabs right.

The other problem for me is “mommy guilt”. When we stay in the same hotel room, I hear every turn he makes. I sleep for an hour or two and wake to one of any number of noises. I look across the room and see my son sleeping. I feel like I should be testing. I also definitely want to get some sleep and relax as well. He might be high or with all of the insulin we have been pumping into him, what if he is finally low? I have to test.

Night testing is a personal choice. After reading a recent study stating that 5-27% of people with Type 1 diabetes will die of Dead in Bed Syndrome, my choice is to continue to test at night. I have always been a night tester but I completely admit to getting tired. Often I don’t fall asleep until at least 11pm and seem to wake up within two hours. I will test my son then and then its back to doze for a bit. The first test has happened because I am positive that it must be at least 3 or 4am. The second test will happen because I am paranoid that its later and there is a reason that I have woken up.

The other night, I watched my son sleep. I woke up to test. I watched him sleep. I finally fell asleep. I woke to hearing his pump going off because his insulin was getting low. I tested when I turned off the alarm. I fell asleep. I woke to someone tossing around in bed. I tested. I fell asleep but was woken up by a call reminding me of an endo appointment for next week. The time difference between where the appointment is and where we were located meant that I was answering my phone at 5am. Might as well test but wait, the low insulin alarm is going off as well. I really did not want to get up for half of these tests. I wanted to sleep. I watched the males in my life snoring and enjoying the peace and relaxation of a good sleep. I was jealous. I hated diabetes. I wanted to sleep like this. I wanted a break. One day I guess...

Friday, August 13, 2010

As the mother of a child with diabetes, I spend WAY too much time at the pharmacy. I do not rely on shipments of supplies once every three months but I am seriously thinking that I have to re-examine the way I do buy supplies. I have been spoiled for a long time. I have been using one pharmacy for ten years. I used to jokingly say that with the amount of money I spend in there in a month, I probably cover the cost of at least one person’s wages.

You may have noticed through different posts, that we have moved over the summer. My amazing relationship with my favorite pharmacy has had to come to an end and I am now in quest of a new and at least civil relationship with a new group.

My first experience with the nearest pharmacy left me crying to my one of my former pharmacists begging for their help to find a better place to go. The new people were not nearly as helpful and their service had been poor. Of course my pharmacist friend came through for me but with moving and summer being insane, I have not yet had a chance to try out her recommendation.

In the meantime, I am still going to the pharmacy just down the road. The biggest shock to my system is the cost. In our old pharmacy, because they knew me and had an understanding with the insurance company that my son’s father used, I walked in, ordered what I wanted, waited five minutes on a busy day, was given our supplies and I walked out of the door without being out of pocket anything. Don’t get me wrong, I knew that in a new city this would not be the case. The insurance company does not have this agreement with all pharmacies. It simply applied to a few in the area where my son’s father worked. That makes sense but also means that now I have to pay all of his supplies out of pocket and then wait for my son’s father to pay me for the supplies. Visa is loving the new system but I am hating it.

It does however give me a new appreciation of things. I physically feel the pain of the uninsured each time I pass that card across the counter and they say “That will be $300.” That is only enough insulin and test strips to last two weeks (I hope). The thought of that doubled was more than what I had been paying for rent on my old house each month! How do people do it? No wonder my wallet is red...its bleeding in the pain of all of the money disappearing from it. How will my son cope and test as often as he should when he is on his own? He has to get a job with great insurance coverage. Being a child with Type 1 diabetes he has absolutely no choice. That scares me beyond belief. He will have a pump until he is 25 (as long as he stays in this province) but he won’t be able to afford to test. Holy moly!

I have learned that if I am going to survive waiting for the money to come in from my ex-husband to cover the supplies I buy, I have to be much more organized and not stock-pile as much as we once did. Well, unless I stockpile in a monthly purchase! Seriously, I am most likely going to have to send him the receipts on a regular basis (the pharmacy did offer an alternative but I don’t know if he will go for that one or not). To reduce my own debt load while waiting to be paid, it makes more sense for me to learn how many test strips, etc he uses in a month and going in and buying the works at one time. That will be so difficult--being organized and living with diabetes? Can people really do this?

As I have said before, I am easily distracted and in the pharmacy is no different. While waiting for them to bleed my wallet once again I saw it! I have been drooling over the ads and wondering what it would be like to use for months. I have tried to see if I could find a way to get a free one considering how many test strips we use but no way. I saw the price tag and my drool dried up as I thought...that is a box of strips Bud!

What was torturing me so? The new USB Contour. I am a meter junky. I have to try them all. I have yet to find one that I truly love. I have passed the addiction on to my son. If he had been there he would have been begging me to get it. When we spend over $500 on test strips each month, I really can’t justify another $100 for a meter just to see if we like it. My son does love his Contour—the regular one that is. Personally I am not that fussy over it but I do most of my testing at night so my scale is different that his. Oh well, I will keep dreaming and wait until the decide to give them to those of us who use so many strips.

In the meantime, I will just try to black out the pain my wallet keeps feeling each time I walk through those lovely pharmacy doors and pretend that my wallet is only red because I love the color.

Wednesday, August 11, 2010

I am "supposed" to be going through school policies, getting notes in order, preparing for a conference at the end of the month and thinking about preparing for my son to go back to school in a new school in September. In case you did not know by now, I am easily distracted.

Tonight I was going through a notebook trying to decide what is important and if I should be using it to make new notes on schools and school policies. Before I found anything pertinent, I came across basal rates from November of 2004. We were using rates of .2 units per hour. His highest rate was .4. His A1c was 6%. Life was good.

I can't complain too much because so far his A1c has remained under 7% but with puberty and independence getting in the way of Mom's control, I am not sure how long I can maintain such good results. I will do it as long as I can don't get me wrong. This momma does not give up easily. My son's health is on the line here and I will teach him to look after himself. I know he will do what he wants when he is not around Mom. Years ago I learned about something called "metabolic memory". What this means is that for every year of good control I have maintained, his body will remember for another seven years and protect him. This hopefully means that I will not have to subscribe to the http://www.redurine.com/ website and hone up on my knowledge of kidney disease anytime soon. This gives me warm fuzzy thoughts and peace of mind.

He is no longer that 27kg little boy. He is now a 100+ pound young man who is rapidly stretching and will soon look down on me. At that point the only thing living in the house that won't look down on me will be the dogs! Where did the time go? From basals of .3units to basals of 1.15 and increasing. His carb to insulin ratio used to be 30 carbs to one unit--now its 6 to 1!

Would I like to turn back the clock? No not really. He is becoming more independent. Its painful to watch but its good for both of us. He is becoming his own person. That is scary to watch but interesting as well. Imagine what I will be saying in another six years? No, I can't even go there. He will be about to turn 19! Legal drinking age. Out of school. Onto university. Hyperventilating!

Oh yeah, I have six years to prepare myself. Thank heavens! For now I will have to prepare for a vacation and then a new school. There is always something!

Monday, August 9, 2010

Okay, don't let it get out but I am missing my son. He has only been gone for a week and will be back with me again in six days (not like I'm counting) but he has spent most of his summer away from me so far. This is a first. We have never been apart this much.

Now I am sure that he is doing his own happy dance and loving the freedom. As my fiance suggested, he is most likely not missing "did you bolus? Did you test? How many carbs are in that? Did you change your site?" I don't miss nagging him or getting up to test in the middle of the night. Last night I was up enough times on my own that I figured I could have done some great basal testing but I digress.

Over the past few days I have been making up fruit salad almost every morning. Everyone in the house likes fruit but few actually go in the fridge and grab it as a snack...except my missing child. Just before he went to stay with his father, I had to limit his fruit intake. I was seriously getting worried about some of the fruit running straight through his system. He was easily eating 6 plums a day and then moving on to bananas and other items he found in the fridge. Don't get me wrong, I much prefer this to chasing him out of the cookie jar. This is why I noticed his absence so much more this weekend. I had all of this fruit...and I still had all of this fruit!

I reminded myself that he would be back next week and we would all be heading off for a great family vacation before school starts. He would get to eat lots of fresh fruit (right off of the vine!) and catch up with great friends and family.

Remembering that I still had another child left at home, we decided to do something special for him on Sunday. He had just bought himself a "new to him", quad and was dying to try it out. Because we are now living in an urban setting, he can't just hop on and head out through the backyard. My fiance loaded up the new beast and headed off to a park where my son could open the vehicle up, Mom could try to avoid a stroke, and enjoy a walk and relax while the older child could try, with glee, to kill himself.

The afternoon went well. Son was happy. Mom survived and got some much needed exercise. Since it was a sunny Sunday, we went for a small drive on our way home. Where did that drive take us but of course to a lovely ice-cream parlour. We had definitely earned such a tasty treat!

As we stood at the counter making our choice, I happened to notice something blue around the waist of one of the workers. When she leaned down into the cooler near me, I saw tubing! She was wearing a pump! Was it an ice blue Cozmo or did she have a Medtronic pump on? I looked a little closer. Medtronic! I quietly whispered to my family that this girl was wearing a Medtronic pump!

The first look was "sure". The next remark came from my oldest son. He simply stated that I was creepy! I didn't say anything to this girl. I didn't ask about the bulge at the front of her shirt and ask if she was using the CGMS. I just noticed that she had a pump. In my own head I wondered if she knew the carb count to every flavour in the store but I never asked her.

When I mentioned my son's reaction to a few friends, they kindly reassured me that I was not "creepy". I was normal...well in the world of diabetes. One friend told me that her young daughter flashed a large biker with her pump when she noticed his. Mom was happy that it resulted in a pleasant conversation. Another friend mentioned that she feels like she has met another member of a cool club when shirts rise and pumps are revealed.

I know my youngest son would not have thought it was creepy. He would have dissed her choice of pumps but he would not have thought it creepy. We search for pumps all of the time! Its just part of living with diabetes I think.

Thursday, August 5, 2010

As my children age, more and more I understand why animals eat their young. It saves you a lot of grief later on in life. Sure they are cute and they come up with some sweet things when they are young but then they become teens. The animal kingdom realizes this and some of them are smart enough to end their misery before it starts.

Yes, I am just kidding...most of the time. I love my kids more than anything. They have been my life for the past 16+ years and there are very few of those years that I would trade for anything. We have made some amazing memories but still there are times when we are going through these teen years that I really have to work hard to focus on the good stuff and not the creature in front of me.

What tests me the most? Well a lot of things but as my youngest enters the new realm of teenage hood and diabetes becomes a bigger beast than ever, the Swiss cheese brain of a teen can really push my buttons.

He is off with his father again for two weeks. Before he left he began to do lovely things like forget to bolus. Next it was forget to test. Logging was happening because Mom was doing it herself but she made him stand right beside her until everything was noted and answer all of her questions. I did my very best to breathe with each..."Oh yeah. I forgot to test then." and "Oh yeah, I guess I didn't bolus that piece of ice cream cake after all."

As we waited for his plane to board we went over those last minute rules.

"You will bolus.""You will test.""You will log.""When you come home, we are leaving right away so make sure everything is updated. We have to see the new D team when we get back.""Don't forget your site changes. You know I will be calling to make sure you have enough insulin."

And yes, his response was to glaze over after telling me that of course he would remember! I needed to remember who I was talking to. That was the problem, I remembered that the child I was talking to was the same one who had just forgot to bolus ice cream cake the night before. Oh my!

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Disclaimer...in case you didn't already know...

None of the writing, opinions, or information contained in this blog should be taken as any kind of suggestion for your own diabetes care. I am not a doctor, dietician or trained diabetes educator (although I play one in real life) and have no formal medical training. If you have questions or concerns about individual health matters or the management of your diabetes, please consult your doctor, specialist nurse or diabetes care team.